Sunday, June 27, 2010

baby Bjorn bike riding, sprinklers and a very yummy lollipop.

Before you call the authorities on my family for the first picture please imagine if you will a screaming, 11 month old. The whole week has been one big scream fest and this made Piper immensely, you wont be able to see it in her face but as you can see she is not screaming. So she was thrilled. Take my word for it.

Steroids are done. And by last night she was much improved. I have high hopes for an entire night sleep but wont bet anything worth anything on it. This afternoon while kissing on Piper's sweet little (non-screaming) face I spied something I had been dreaming of...a tooth. A little white tooth cutting its way into Pipers little gums. Perhaps another reason that this week has been so very horrid?

Either way, we are alive and well. No more screaming from any of us girls and a few snippets of the week to show me that it wasn't THAT bad was it??? (yes, yes it was actually)

And another thing I am happy to report...I am finishing up my slump, thank you very much. Its a mind over matter sort of thing. No, not really. Its the reminder that my God loves me. Nothing more and nothing less but somehow I am going to use that simple truth to catapult me back into the land of the living. Plus, someone needs to resume the cooking, cleaning and laundry around here for my motley crew. So thank you Lord...I have made it. Literally, thank you sweet Lord.

Wednesday, June 23, 2010

slumping away

I am not going to lie. I am having a moment. Well, that's not entirely true. I was having a moment many moments ago and now I am classifying myself as "slumped". Overwhelmed would suffice as well as discouraged.

No. No real reason. Steroid week here in la casa de Needham is horrid. Tiring. Exhausting. A constant reminder that all is not (entirely) well around here. But steroids happen. About every 4 weeks give or take. I roll with it. You know, forget about doing dishes and/or laundry and just attempt to hug on Piper and squeak out some quality time with Linely. Oh, yeah, the hubby. Him too. Like I said, we roll with it.

Except mommy is in a slump. I am tired. I am crying a lot. There is yelling going on and its the lady in charge, not the kiddos. You know what though? I am attempting to focus on today. Not tomorrow. Not Thanksgiving. Not anything other than today...which may be easier to do when Piper is not on 2x daily steroids, but even then I am not sure.

I have this overwhelming urge to pack the girls and the hubs and get into my car and just GO. (Especially because for once, my car is reliable...and good on gas. We could make it clear to California with no problemos.)

I want to get away from blood counts, chemo, food issues, guilt, scrubs, uncertainty, the smell of heparin, and bald heads. I just want to go back to the way things used to be. Back to when I thought Chad not having a great job was worth the time I spent complaining about it. Back to when having a rough time getting Linley to bed was enough to wear me out. Back to when I was able to dream in confidence about little matching girls running in the grass. Or sisters giggling in bed at night. Or two blond heads looking ahead at the road as they pull away for some retail therapy. Or even adding many, many more beautiful blond heads to the annual Christmas card. I have dreams but they are uncertain at best. This is exhausting. I am exhausted. Nothing in this world can give me rest. The one Source that I know I should lean on seems like just too much work.

Yes, I know...

Today is a gift.

This is a season.

Life goes on.

Have big dreams.

Trust in the Lord.

I KNOW. But I just cant seem to shake this slump. I just cant seem to sleep at night. Or rest my heart and mind enough to feel relief from this overwhelming discouragement.

Wednesday, June 16, 2010

I'd like to order a grande iced green tea lemonade with 2 shots of sweetner please.

I WILL survive June, July, August and September with the help of the local Starbucks. Oh Georgia...why can't you stay cool a little longer?

Tuesday, June 15, 2010

happy to be home

I attempted to post some pictures on here last night but the hospital Internet was being wacky. Here is how we spent the evening, hanging out outside playing putt putt, pretending the be mermaids and riding on the dog-looking things downstairs. The girls and I were home by 2ish today (record time for this hospital) and Linley is now dressing up in my "fancy" clothes and Piper is happily eating clam chowder with Chad. My back hurts, my feet are swollen and I am beyond exhausted. I am very, very, very much looking forward to getting the girls in bed and settling in for the night and waiting on Chad to get home from work. There truly is no place like home. One thing that I am still learning each visit is that I am not alone in this cancer battle. There are many other mommy's and daddy's and patients and siblings who also deal with this and deal with it well. When Piper began her treatment back in September we made many friends. A lot of those same friends have completed their treatments or are in the maintenance phase and we don't get to see their faces much...I miss that encouragement. But this visit I met and bonded with a few other mommy's, some who were new diagnosis and some who are veterans. I was also reminded just how much I love Piper's Aflac nurses. It does my heart good to see both old and new friends. You all mean the world to us!

Monday, June 14, 2010

He cares for me.

I have had an old song that my mom used to sing to us floating through my head all day. Its based on scripture and since you (unfortunately) aren't close enough to hear me sing, I will write out the words
"My God shall supply all your needs, according to His riches and glory. He will make His angels charge over thee, Jehovah Jirah cares for me, for me, for me. Jehovah Jirah cares for me."

Simple but true. I believe that God is supplying all of my needs. I believe He is doing so in His own perfect way and I believe that irregardless of how many bad days in a row that I have, He still cares very much for me. Of course, believing that and attempting to not be a total sour-puss when life feels very "lemony" instead of "lemonady" is a whole other story.

Piper is fantastic. Her ANC went from 290 to 1230 within 24 hours. I still find it amazing how quickly the drugs can cause counts to both jump up and drop down. So, she was able to discontinue to Neupogen (given to rise those white blood cells to fight off infections) and will be finishing up one antibiotic tomorrow. The plan is to leave tomorrow morning, but we still have to go to about 45 minutes in the opposite direction to see a home health nurse to train me how to use the medicine ball and all the other instructions I will need. After that we should be home and healthy, God willing, for a few weeks except for day clinic visits on Mondays. Oh, and to show us just how good she really is feeling, Piper is beginning to walk. At first it was just staggering and holding onto my fingers and now she is able to hold onto one finger and trot around quite well. She even took an "almost-step" from one ride-on toy to another. What a little show off, eh?

Linley has been here with me since Saturday morning and its been wonderful. She loves the nurses and loves the attention and really, really loves the mailbox that was set up outside out door. It often has a little note or something for her and she just lights up. Last night, after we put Piper to bed, Linley was able to wander around with me and then cuddle up and read herself to sleep. She felt very grown up and slept until almost 9 this morning. And today Camp Sunshine (a camp for cancer kiddos) came to Aflac to do crafts and play games and she even got to see a magic show. Somehow, Piper paid attention for a large portion of it too. Camp Sunshine should be back tomorrow so maybe Linley will be able to participate in some activities before we run out the door....I mean leave.

I am going to take some pics of the girls tonight and post again. Its just not fair to keep sweetness all to myself.

Saturday, June 12, 2010


Still working our way through this. Pipers ANC jumped from 30 to 23o overnight so that is good. She still is here until Monday night or Tuesday morning. We will go home with a "medicine ball" apparently which will dose out her anitbiotics for 30 min at a time every 8 hours. I am very tired even though I was able to go home and sleep in until 9am. (Linley brought me breakfast in bed consisting of a tomato, 3 peanut butter M&M's and a yogurt covered pretzel) Leukemis sucks me dry. I am a bone-weary that I dont think I ever will get rest from. And that simply stinks.
Pipers bottom is looking better, thanks to the white blood cells rising. She is a little fussier, also thanks to the white blood counts rising. Linley and Chad have joined us here tonight and Linley will be here with me and Piper until we are discharged this week. I forsee alot of walking and alot less sleeping and alone time. Can you tell that I am just tired? Im going to stop the update now before I begin to whine like a baby.

Thursday, June 10, 2010


There are a few things that I should not do when I am here at Aflac. One is visit the gift shop more than 2x per day. Another is staying up so late visiting with anyone who will talk to me in full sentences. And the third thing is "decorate" my blog. I can't do it. I have tried and it is to no avail. I do not know what html is and I do not know what a template is. I still cannot figure out how to post a picture and then write a little note under it instead of all the pics and then a long, long (usually) run on sentence or paragraph of ramblings. Or very important updates but often enough, its ramblings. So I am going to leave this blog the way it is until someone who knows what they are doing can fix it up for me. That would be so grand. And fancy too don't you think? Check back to see if anyone has taken pity on me and helped me out...
Other than the money I am spending and the sleep I am missing, all is well still. Each day Piper gets a little more "umphff" to her. Her counts still have not begun to rise much but there is still nothing growing on her cultures. Praise God. Here's to hoping I sleep with my whole little family in my own home on Monday night. We continue to move around the hospital ALL.DAY.LONG. Ask anyone. We simply cannot stay still. Neither me or Piper, so we are on the go. Now she wants to be walking around so we often leave the stroller in the room and march around. She is the cutest thing. And Linley came up today with Chad so I had double the cuteness. We had a lot of fun and Piper was so, so happy to wake up from her nap and see her sister and her daddy. And I was so, so happy to leave the girls with Chad and go grab myself some dinner.
Tomorrow I expect more of the same. My mom, who is my absolute favorite person in the world most of the time since September, is staying the night with Piper while I meet up with Linley and Chad to see Linleys VBS program and take part in the hot dog cookout too. I plan to bring Linley back with me on Saturday until we are allowed out of this joint on Monday, hopefully. And next week I plan to do nothing but enjoy my girls and our summer.

Wednesday, June 9, 2010

6/9/10 (I think)

I am going to be quick (supposedly) because Piper is napping and I am never sure how long that will last. Although this morning she napped long enough for me to shower...HUGE accomplishment here folks. So I smell nice and Piper is sleeping happily and for the most part things are looking up. The Dr took her off of the antibiotic that treats viruses because she never developed one. She continues the other 2 for 14 days from yesterday, but 7 days worth of those doses have to be here at the hospital. And the rest we MAY be able to complete at home. Apparently because the bacterial infection is in her port line she has to receive the antibiotic through the port so they should be able to keep her accessed and hep-locked (where the port stays accessed or connected and the line that hangs out to connect to the IV pole is basically plugged up until something needs to be given. It keeps us from having to poke her too many times) when we go home on Monday and give her the antibiotic through that or have home health come and do it. Frankly we have another 6 days to ponder out a plan.

Piper is doing great. No more bacteria being shown in her cultures. She is breaking out in a rash on her bottom and they will be running a culture on that just in case. As of right now though they think it is simply a diaper rash from yucky antibiotics. Her ANC went from 0 to 20 and that thrilled me. It also thrilled me that they chose to allow me to have Piper hep-locked when she isn't receiving antibiotics so we spent the majority of the day outside in the grass or me holding her hands while she walked around and showed off her pretty shoes.

I am making a list of the Beads of Courage that this girl has accumulated since her 5 days in the clinic and I am pretty sure it'll be a doozy of a list for the night shift lady. And speaking of the night shift, Piper did wonderfully last night and I thank Heather for that. She is one of my favorite nurses and people and a darn funny blogger to top it off. I wish I had my camera here to take some pictures of all we know, the shopping and eating out. The picnics in the grass and the "movies" (aka: the fish wall). This hospital is amazing. Piper has made friends with the coffee shop lady, the security guards, the janitors, definitely all the Aflac nurses, the grill guy down in the cafeteria and anyone else who dares to look at her toothless, nose-crinkling smile.

Tuesday, June 8, 2010

After a ridiculously long night with a ridiculously little amount of sleep, Piper has begun to perk up. Between antibiotics, vitals, Neupogen drips and platelet transfusions...I think her grand total was maybe 4 hours. Ugh. Like I said yesterday, her cultures came back positive for a bacterial infection and today they put a name with it that I will never be able to repeat. Needless to say, they began a 3rd "umbrella" antibiotic that is stronger for bacterial infections as opposed to viral infections. And her cultures they drew last night have not shown any growth of "whats-the-name" bacterial infection so we are hoping tonight's wont either and that they first dose of the antibiotic did the trick. Of course we will continue at least 2 of the 3 for the next 7-10 days. And of course we are really, really hoping her white blood counts will rise quickly. Piper received a blood transfusion today and it almost immediately got her smiling and giggling. So refreshing to hear that after the last week or so. Made me so happy I splurged on a balloon in the Incredibly Awesome gift shop. (seriously, ask Chad how much I spend, er, I mean how much I like this gift shop) I even threw some silly bands in for Linley because I am not above bribing her to love me and miss me as much as I love and miss her.

As always, we wait. One doctor said we will be here through the course of her 7 days of antibiotics and another said that we will have to see what her counts do and also what her cultures continue to grow, or not grow. Amazingly I am becoming accustomed to being told very vague facts and not questioning them too much. Thanks Leukemia for making me a more easy-going person...Someone tell my poor mom and husband.

I will keep posting on her when I know more and when Piper sleeps in her crib alone and not draped across me.

Monday, June 7, 2010


Here we are again. Back at Aflac...back at Childrens Healthcare of Atlanta. Dont get me wrong, I am incredibley thankful for these amazing doctors and nurses but I am not so thankful to be back. Linley is in VBS this week and I was looking forward to hearing about all those fun things she was doing but instead I am here in room 196 just hanging out. Piper began a fever on Sunday afternoon while I was at lunch with my sweet friend Kara. By the time Kara and I ate lunch and browsed Barnes and Nobles Piper was up to 100.7 and we knew we were "going in" because once you get into Aflac, getting out is close to impossible. Sure enough, Chad dropped Linley off with my mother in law and went on to work and I packed up a very feverish Piper and headed to the ER. We got into a room by 8ish and have been here since. Her blood cultures came back with Gram Negative Rods (or Gram Rods Negative...I dont know) and so we know it is a bacterial infection as opposed to a viral. They have her on 3 antibiotics and tylenol as needed and we are simply waiting to see what type of bacterial infection it is so we can treat it more specifically. She is still getting her Neupogen, which helps her white blood cells rise. Hopefully all of her counts will begin to rise soon also and that should help out. Her left ear had some dried blood on it when she woke from her nap on my chest this morning and the doctor said her eardrum was red but the 3 antibiotics should clear that up. They did go ahead and give her a platelet transfusion to keep from more bleeding out.
So now we wait and see. We expected her counts to bottom out but Thursday they were at 1500 and Sunday at 0 so that was a pretty steep drop. Piper isnt too hungry but I have gotten a few ounces in her and she is on fluids to keep from becoming dehydrated. My mom is here with me tonight and is currently holding the little miss while I type this. I am trying to not be to worried about this, but keep in mind that this is her first infection. Each other fever was simply that, a fever. I am praying that she is able to hold her own against whatever is fighting inside her until her counts recover enough to heal her up. Thankfully, she is not inconsolable but definitely just pathetic.
I will update when I hear more. Right now I am going to attempt to get some sleep. This place feels like noon at midnight sometimes and I am thinking this may be one of those nights.

Wednesday, June 2, 2010

Mother's Day Revisited

First off, yes I do know that the majority of my posts are done days, even weeks from when the picture or event happened. My bad. I have no excuse so I am going to pretend that I don't do that and quickly plow into my latest/newest post about Mothers Day 2010. And it was a good one. Simple and lovely day and I was given a simple and lovely gift as well...BUT...because we are the Needham family, nothing is simply simple. Oftentimes lovely but rarely simple.

When Chad went to order my gift I was in New Hampshire, He was mainly manning Piper, He was in the midst of finals and mainly, he was desperately missing his wife. (OK, I added that part but I am certain it was part of the equation) He was a little busy and forgot that Piper begins with a P and not a J so this beautiful necklace came to the house and was opened by an unsuspecting me. I thought it was beautiful (and it is!) but yes dear, I noticed the J. When I questioned Chad about the J, he actually said he was hoping I wouldn't notice at first. Really? C'mon now. You know I notice, you know, almost everything. (And if you cannot tell, it is a twig and each leaf has one of our initials on it.) After a good laugh, we re mailed it out and I finally received the perfected one after we returned from the beach. And it is simple and lovely and I am sure that you will agree. (Notice the C, S, L, and P...much better for this little crew)

In the works for the next few days: pictures of sweet Piper, who does not have all the attention for the first time in her life and is thriving supremely well. Also, pictures of our humble and happy shoebox/apartment. And maybe, just maybe I am going to share my latest obsession...yellow shoes. I have 5 pairs ( I believe) and that oddity in itself is due a picture or so. Agree?